Tourette's helped me embrace the unknowns of chronic illness- hypermobility & Neurodivergence

May 15th to June 15th is Tourette's Awareness month and June 7th is Tourette's Awareness day

For Tourette’s awareness day & month, I wanted to share my experience as a chronically ill Touretter. My name is Romy, I’m 22, and I was diagnosed with Tourette’s seven years ago. I also have a type of Dysautonomia, Postural Tachcardia Syndrome (POTS) age 13, Autism age 12 , infection-related issues, a neuroimmune disease and I've been told probably hypermobility but do not have the diagnosis yet.

SEDSConnective note : Hypermobility is an umbrella term, for the many acronyms formally used, and it is whole body brain connective tissue disorder with weaker collagen proteins. Many symptoms some visible and some invisible and affect the whole body brain system from the autonomic nervous system to organs, heart, vascular and cardiopathy systems to the musculoskeltal frame, allergies, skin fragility and also the head, brain, ears, teeth even eyes for some people. It causes pain, chronic fatigue and instability and hEDS is the most common form of Ehlers-Danlos syndrome plus the closely related Hypermobility Spectrum Disorders for adults.

Tourette Syndrome (TS) is a form of neurodivergence that leads to tics - involuntary movements and vocalisations that can be simple or complex. My tics mostly involve saying random phrases, swearing, hitting walls and tensing muscles. While some of my tics can be humorous, the syndrome itself can be debilitating.

As a child, my tics and Tourettic Obsessive Compulsive Disorder (OCD) were so severe that I spent four years unable to dress myself and had no free time to do anything fun. I remember my psychologist noting down that I “could not perform any task successfully.”

In secondary school, my tics were so extreme that I needed a reduced timetable and the SENCO suggested I be moved to a Medical Pupil Referral Unit. My tics impacted my reading as I would try to rip pages out of books, they impacted writing as I would scribble over the page, throw pens at teachers, and rip up worksheets They once caused me to separate a laptop screen from the keyboard. I would often come home from school in pain and covered in bruises due to the repetitive jerking movements and tics where I’d hit myself. The only thing that seemed to relieve some of the pain and discomfort was an Epsom salt bath.

SEDSConnective umbrella of common conditions symptoms following data

Sometimes my tics would cause me to hyperextend my arms, leading to questions about “why they look like that?” My hypermobility thankfully doesn’t cause me joint pain or dislocations, but it does mean that I have poor proprioception, am not able to go on fairground rides due to getting sprains easily and get trapped nerves easily.

At the age of 18, I became extremely chronically ill. It was a battle to get doctors to believe me or help due to the constant medical gaslighting. They would blame my weakness and pain on Autism, saying “it’s just a difference in perception” or they would blame it on my tics. I had no choice but to look outside of the NHS to find answers and get treatment to help.

I am still too ill to go to university or work full-time, which fills me with grief. Not knowing whether further treatment for infection-related issues will give me a “normal” life or whether some of my difficulties with hypermobility like Chronic fatigue, migraines and POTS fills me with uncertainty.

Csecs et al paper on ). Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain (2022)

Will I ever be able to study, not need a wheelchair, or be able to brush and wash my hair myself? I don’t know. This uncertainty is difficult to deal with, but my Tourette’s has already exposed me to a lot of uncertainty as I never know what my tics are going to make me say or do from one minute to the next, so it has taught me to take it one day at a time and embrace the unknown in relation to my chronic illness as well. I am happy to join with SEDSConnective and have friends with many similar symptoms.

You can find more research on these conditions here :

Csecs et al (2022) https://www.sedsconnective.org/publications

The pain of Tourette’s: ‘I’m always covered in bruises’. BBC News